wednesday 6/26/2013

I got to see Ava for about 5 minutes while the nurse watched Ivy at the front desk for me. I didn't have time to drive Ivy to the babysitter in Taylorsville (who I met yesterday). The nurse today was able to wean Ava to 3 Liters by nasal cannula. She did have one strange and slightly scary decceleration spell where her heart rate dropped into the 70's for no apparent reason. Her oxygen stayed up just fine. It followed her session with physical therapy. She was also extremely pale when this happened. They drew a host of labs which were all perfectly fine and got another chest X-Ray which looked even better than the last one. So this incident is still a mystery. 

tuesday 6/25/2013

Nothing new, really. She is still on half feeds- working her way up to the full 63mLs. They decided today to fortify the breast milk again with a high calorie supplement, and it frustrates me that this wasn't done automatically when the feeds were restarted since this is what she has had for many many weeks before that 4th dialaton. So she is still getting the TPN IV nutrition in addition to the breastmilk through the NG tube. Ava is on 5L flow and room air oxygen by high flow nasal cannula. Again, she needs to get down to 2 before she can eat. The nurse today had never had her before and wasn't intent on changing anything, so I didn't push it, though I thought they should be working toward 4L today since she's had 5L for over 24 hours now. This nurse also observed her twitching that looks like seizures (old news) and the nurse practitioner...who also had never had her, called neurology and got an order for phenobarbitol. She called to tell me and I sort of ranted on the phone. We've tried phenobarbitol 2 other times and clonadine once and I was not going to start phenobarbitol a 3rd time before fully investigating the issue. So I pulled out the "parent card" and refused the phenobarbitol, which I am sure they aren't used to except by annoying nurse mommies. So, by the time I had gotten in to the NICU today, the NP had talked to an attending doctor who had Ava before and the issue of phenobarbitol was dropped. These are the little things I am thankful to be able to do since I understand the medical "stuff" and have been present on a day to day basis for Ava which really does make a difference. Most out-of-town parents are not able to do this...which is why you don't see many parents in the NICU every day, especially on weekdays. Our friends and family have made this possible for us, so thank you!

sunday 6/23/2013

Ava is improving more. The nurse today was confused and was only giving Ava 10ml at each feeding, when she had been up to 18 mls all night and was supposed to be increasing from there..so that didn't make me too happy since I didn't get there until about 1:30 and so it didn't get caught 'til then. The CPAP machine was weaned again. She is now completely off the rate and the pressure has been reduced to a PEEP of 5. She should be switched to a high flow nasal cannula tonight, though she was breathing a little fast when I left so I don't know if they had to go up on the pressure to help her out a little. When her pressure on the high flow cannula are 2 or below, she will be allowed to learn oral feeding.      I learned today that this nasty incident of the last week which caused infection and inflammation of the right lobe of her lung has caused Chronic Lung Disease. The nurse practitioner said that the lung will heal itself in about 2 years. It may increase her oxygen needs at discharge but she said that usually kids only need oxygen for a few months. It may also affect her if she catches cold/bugs in the winter, or whenever really....so our kids will be in "lock-down" during the winter months. I asked about the likelihood of a G-tube at discharge and the nurse practitioner said that that is pretty common, and a likely possibility. She said it takes just over a week to recover from that surgery. 

friday 6/21/2013

What a great day for Ava. She passed her esophagram -yay!!  Her lab values are looking better. At about 8pm tonight surgery finally pulled her chest tube. She has been weaned off the rate on the CPAP breathing machine. Now they will work on weaning the pressure, so that she can move to a high flow nasal cannula and then back to a regular nasal cannula. She got her pacifier back -double yay! She has been alert and awake most of the day. It's like she's making up for lost time. I finally got to hold her about 10pm, skin to skin. She still lay there awake just listening to me talk to the nurse and was still awake when I left at midnight. Her NG feeds of breastmilk were restarted at 10mls every 3 hours, and should increase back to the 60mls over the next few days. At the same time the TPN  (artificial nutrition through the veins) will be weaned. She is still getting the morphine every 3 hours and will probably be weaned from that soon as the infection clears up more. I am hoping she gets moved to a regular crib next week- then we'll be able to put more items for her to look at in there. Right now she just has a mirror and the baby doll "Ivy" that I got her...which she loves to look at. We got lots of smiles out of her today. It should be a good weekend for recovery. I have no idea what the next step is. I imagine we'll try bottle feeds again when she gets back to a nasal cannula for breathing.We'll see how much she'll be able to take that way, but we may be looking at getting a G-tube directly into the stomach to supplement her feeds to get her home faster. This is pretty common...and of course requires another surgery.

thursday 6/20/2013

Esophagram/swallow study scheduled for tomorrow (Friday). They said they wanted her to have one extra day of antibiotics. I think it was a cop-out excuse for forgetting to schedule her today, but who knows. She had a restful night last night. The nurse today switched the type of breathing cannula so that she doesn't have to wear the tight hat that kept the old one in place, and apparently Ava likes it better. It looks like the pneumonia is improving according to the chest X-Ray, but the pocket of fluid doesn't appear to have changed.

wednesday 6/19/2013

No changes today. I am still not allowed to hold Ava because of the chest tube, which is ok with me. I only wanted to hold her if I could be a calming source, but given her pain, I am pretty sure that holding her would not make a difference. She had about 30 minutes of severe pain today, the worst the nurse or I had seen. She got an extra dose of morphine and an extra dose of versed, and the NP was called and ordered an extra dose of ativan as well, which she wound up not needing by the time it was ready.  Everything else is the same. Pray that her esophagram tomorrow is perfect and she can get this dang painful chest tube out.

tuesday 6/18/2013

No changes. It was decided not to do the thoracentesis. As long as Ava's CRP lab value (which is an indication of inflammation) keeps decreasing, Nothing will be done about the pocket of fluid at the base of the right lung lobe. The pocket could be fluid or infection or a hematoma (blood collection). It is a direct result  of the perforation last Thursday. If for some reason the CRP lab value increases, they may consider making an incision and extracting the infection. The esophagram/swallow study is scheduled for Thursday. It no contrast dye leaks out, then the leak is considered healed and she can have the painful chest tube removed and restart her feedings through the NG tube AND be allowed to have her pacifier back..which she really wants! Her vancomycin and Gentamycin antibiotic doses were both increased significantly to reach therapeutic levels today, so i am hoping to see more marked improvement by tomorrow and the next day. Her little feet are SO bruised from all the blood they've taken in the last few days. She just tucks her legs up as high as she can. I'm still not allowed to hold her which I might fight harder here soon if she shows improvement tomorrow. She is getting morphine every 3 hours and versed as needed which is very frequent.

monday 6/17/13

I'd like to say she's improving, but the only thing that improved was her white blood cell count went from 61 to 50. She is in a lot of pain, presumably from the chest tube, so her morphine is now scheduled every 3 hours instead of give "as needed." She is also now being given versed instead of ativan because it's nicer on the veins. The chest x-ray, yesterday, found a pocket of fluid around her right lobe in her lung. The fluid was mobile, not fixed like a pus pocket would be, so the hope was that the chest tube would drain the fluid if we got her in the right position, but its been a day and it still hasn't drained according to the latest x-ray. The x-ray shows that the right lobe is either collapsed or has pneumonia, which is a major contributor to her difficulty breathing. Additionally that pocket of fluid is likely making it difficult for that right lobe to function properly as well. I'm getting mixed reports between the attending and the surgeon as to when the next esophagram is- to see if the tear healed itself. One says "this week" and the other says in "a month." So I'd really like to get that cleared up.  amber

10pm The pocket of fluid that was found around the base of the right lung lobe has become larger and more fixed. Tomorrow she will go down to interventional radiology and they will suck out the fluid with a needle-thoracentesis. Then they will culture the fluid. Hopefully this will reduce a little pressure on that side of her lungs. She is now positoned only on her left side to take as much pressure as possible off that right lobe. She hates it. She's used to being in many different positions all day and all night. They still will not let me hold her which annoys me to no end. Thankfully, she is still on the CPAP breathing machine. THey've had to bump the settings several times but at least we've been able to avoid intubation thus far. She also no longer has her own nurse. She is sharing her nurse with another very needy baby. I've been told that her esophagram is scheduled for either Thursday or Friday. Pray that the tear has repaired itself and we can remove the very painful chest tube. 

Sunday 6/16/13 Rough stuff continues

Ava is stabilized and that's about as good as it gets. They had to assist her breathing overnight and she is still on it today. She has a pocket of infection that they are going to do an ultrasound on and possibly pull out with a syringe. The doc says that the pocket was created because of the perforation in Ava's esophagus. They don't want the pocket to continue to build and cause more serious problems... Like they aren't serious enough already... So, here I sit on Father's Day hoping and praying for her recovery. Not the best Father's Day but at least I get to see sweet little Ava. Now it's just a waiting and praying game. I love my family so much. Thank God for the strength of my wife.

saturday 6/15/2013

Ava is not doing so well. She is septic- blood infection, which is not good. It is most likely due to the perforation that occurred when dialating the esophagus on Thursday. She is extremely lethargic. Her "infection blood lab draws" aren't very good. She is on 4 broad spectrum antibiotics total now. She is still in a lot of pain, but the nurse practitioner wants to back off on the morphine because he is worried about her respiratory status (which can slow down with morphine). He says that she is doing worse now than during the day. She is having pretty severe apnea episodes (stop breathing) so they have added a rate on the CpAP machine which forces breaths..but he called to tell me they might intubate her tonight to take over her breathing. Surgery wants him to wait until they absolutely have to because it is hard on the esophagus to put a tube down there...which is what we've been trying to fix with all the dialations. So he says if they do intubate her tonight it will be emergent, and that is why he is calling me now so its not a surprise. Not Cool- Need prayers- As usual. 

1am. I went to see Ava. I found that she had desated earlier to 18% !! They had to " bag her" with oxygen earlier. She has been switched to a 1:1 staffing ratio, so she has her own nurse to make sure she keeps breathing- This is in an effort to avoid intubation, to protect the esophagus. Any other baby would have been intubated by now. The nurse thought that the morphine might have been causing the apnea, so he dose was cut in half, but it can be given twice as often- every 2 hours instead of every 4. She's getting about 2 x-rays a day to watch her lungs. Scary stuff, man. Her poor little eyes are swollen shut now.

Ava's dilation recovery 6/14/13

Things are a bit rough today... All the hard work Ava has put in has been set back. Her chest tube causes a bit of pain for her and she has moments of sharp pains that causes her to flail and ball up which is pretty hard to watch... She misses her pacifier and sucks on her tongue for comfort and calms down when I talk and stroke her head. They are going to take an X-ray later today to see if there is still air in her chest cavity from the perforation in her esophagus but the nursing staff are hopeful. She has a slight fever that they are managing with Tylenol.    Keep us in your prayers. Pray for Ava most of all.

thursday 6/13/13 set back

Ava's final dialation in the series of 4 was this morning around 11. It did not go great. After the stretching procedure they do an esophagram (put a dye down her throat to make sure fluid only goes to the stomach), but they found that some leaked out..which means the procedure caused a small tear in the esophagus. This is a major risk for infection. So, a chest tube was placed for drainage, aggressive antibiotics were started, a PICC line was placed, and she will be NPO (nothing by mouth or feeding tube) for the next week minimum. So she will get IV nutrition and her medications will be given through Iv instead of through the feeding tube. The feeding tube was placed in the OR again, but it wlll not be used. The esophagram willl be repeated in a week to see if the small tear healed on its own. I'm not thrilled. 

Visited Ava tonight. I am not allowed to hold her because shifting the chest tube is really painful. She is in a lot of pain and starving so they are alternating doses of morphine and tylenol. The nurse says the hunger pains will subside after a few days as she gets used to the IV nutrition. She was poked soo many times today that she shutters when you first touch her.

wednesday 6/12/13

Sweet day hanging with my baby. Will post pictures later.

tuesday 6/11/2013

Surgery wants to wait until Ava recovers from this last dialation before attempting a swallow study. They said they are going to use a larger balloon this time since it is the last dialation for a while. All dialations from here on out will be on a case by case basis rather than a series like these 4. Ava's oxygen requirements vary throughout the day so she is still not protecting her airway perfectly yet. She was a little on the cranky side today and was a bit sweaty too. I don't know why. She got cold faster with all that sweat. She was just having a "growing" day. She slept a lot.

monday 6/10/2013

Nothing happened The consulting that was supposed to happen between physical/speech therapy and surgery didn't happen. I got there at the end of shift when my parents got to town, so I couldn't nag anyone either. Ava is managing her secretions better. Her oxygen had to be bumped up a couple times. She had one desaturation (low oxygen) spell with pretty severe bradycardia (slow heart rate), that she recovered from on her own. It lasted about 40 seconds. I wasn't there for that.

On another note- The Ronald McDonald ROOM opened up at the hospital today. It is beautiful. The hospital is only providing the space and maybe some laundry services but it is funded by the Ronald McDonald organization. They even have a free laundry room and soap, so I can quit sending my laundry back to Idaho Falls which I am sure Shaun will appreciate. The downside is that there are only 4 tables with 4 chairs in the kitchen and they are serving meals every night. California Pizza Kitchen catered/ donated last night, and they fed at least 75 people. They had to go back to the restaurant to get more food after the first 10 minutes. Then they ran out of food again when they brought it back. The room also has day time napping rooms with real beds that can be checked out. The kitchen is the fanciest thing I've seen. All stainless steel high end commercial appliances.

I call this one "milk face" She was drooling after getting drops of milk on her pacifier. I cleaned her face and got another picture, but I still think this is cute. 

saturday 6/8/2013

It has been an uneventful weekend for Ava...which is good. She still has the repoggle tube out and is handling her secretions pretty well-not perfectly, but well. All through the weekend her blood pressure has been on the high side, not enough to be medicated, but enough that it needs to be looked into. So   they were thinking of doing a renal (kidneys) ultrasound this week. They said kidney stones can cause a high bp-but she doesn't have any pain, which you would expect with stones. Surgery also wanted therapy to consult Monday to determine a plan for beginning oral feedings-or at least examining if she is even ready for them, so we may be looking at another swallow study.   

friday 6/7/2013

Ava had dialation number 3 at 10:30am yesterday morning. It went as smoothly as the first two. In rounds Friday morning (today) the surgeons told the nurses they wanted them to try to take out her repoggle to see if she would swallow her secretions and protect her airway. One way we expect her to protect her airway is to cough up secretions and swallow rather than just let them block her trachea, cutting off her oxygen. Babies who have this Esophageal repair tend to secrete more mucus/spit and she also may be secreting more because of irritation from the repoggle tube, NG tube, and dialation procedures. So, like any reluctant nurse would do, they finally took out the repoggle at 1pm. She had one desaturation spell while Shaun was there, where her oxygen saturation went to 82% and was solved with aggressive suctioning and basically "gagging" her to force her to cough up secretions. She did not desaturate for me while I was visiting, but she was very gurgley when breathing. They had to bump her oxygen up to keep her in the 90's. (The machine will beep anytime her oxygen drops below 92%) Removing the repoggle is just a Trial, and some nurse might decide to put it back in if they are having to suction her more than a couple times in a 12 hour shift. Last night and today I was able to give her tastes of breastmilk on her pacifier during her feedings so that she can associate the two. She has a very strong suck, but she just doesn't swallow as often as she should. This week it was decided that Ava was not gaining enough weight, so her breastmilk given through the NG tube is supplemented with liquid protein. This is in addition to the extra calories that they fortify her milk with.

tuesday 6/3/2013

sweet day for Ava. After talking with therapy yesterday, the doctors approved tastes of breastmilk. So physical/speech therapy showed me how to dip the tip of Ava's pacifier in breastmilk and let her suck on it while she was being fed through the NG tube. We saw her swallow about 3 tImes in 45 minutes but its unknown whether she is able to swallow anything past the surgical site with the NG tube taking up the whole space. In not so friendly news...we were moved from bed 19..which is reportedly the best bed in the unit because of the window with the amazing view...to bed 24 which has a window overlooking a roof and facing the sides of 2 other buildings-bleh. The new room has 6 babies instead of 4 so it is much noisier too. I'm not thrilled with it, but thankful that the nurse was at least able to get us a "window seat" with the move. The next dialation, i was told is Thursday-however, today they said that the chart says "Thursday OR Friday" I just love such ambiguous planning (note sarcasm). Carrie Zummwalt just left. The boys had an absolute blast with her family-though we definitely put them through the wringer. Thanks guys!  oh, brother- its 3am and Ivy has sensed that I left the bed and is waking again. I just medicated Sam for growing pains and "fixed" his bed that had him in a fit of tears. gotta go.